Today in France, a child is born every six hours with cerebral palsy.
An unrecognized disease that affects 125,000 French people and which is the leading cause of motor disability.
But 2021 could mark a turning point in the care of these children from an early age.
In September, new recommendations should be published by the Haute Autorité de santé.
Above all, a major European project aims to prove that an intensive and fun method would increase the autonomy of these children.
20 Minutes
went to Brest, to meet the professionals who organize an internship based on this method and the families who benefit from it.
From our special correspondent in Brest,
" Hello friends !
», Sings Rodolphe, guitar in hand, seated on tiny stools under the trees, surrounded by about thirty adults and children.
We are not in an ordinary nursery, but at the heart of an original clinical trial.
At the Ildys Foundation in Brest, nine children aged 18 months to 4 years with cerebral palsy follow an intensive rehabilitation course for two weeks, based on hide and seek, Power 4, ditties and dinette.
A project to test an innovative rehabilitation method
This Tuesday morning, Mathilde and Lewis have an appointment for outdoor games under a very Breton drizzle.
When Mathilde shows signs of fatigue, Valérie “steals” her 4-year-old car… to encourage her to get back on it.
“Fortunately, ridicule does not kill,” laughs the occupational therapist.
Surrounded each by two professionals, often physiotherapists, Mathilde, Ruben, Alice, Romy and the others learn to walk, to hold a spoon… For these children, born prematurely or after an in utero stroke or an infection, the lack of oxygen destroyed certain circuits in the brain.
Which makes some movements very difficult.
Currently, the reimbursement of cerebral palsy is limited to two physiotherapy sessions per week. Time consuming for parents and painful for children, whose education is cut off. This is why the Cerebral Palsy Foundation has chosen to finance a major European project to the tune of 1.5 million euros. "Our protocol aims to verify that the HABIT-ILE method, used in children over 6 years old, would be just as effective, or even more, in children between 1 and 4 years old", explains Sylvain Brochard, pediatric rehabilitation doctor at CHRU de Brest, which oversees this project initiated in 2019. Because cerebral plasticity at this age could make it possible to create new circuits in the brain.
A method which is based on two requirements: intensity, since we are talking about a two-week course, with five hours a day of "exercises". And especially the playful side, since each child is offered a number of games. Which are thought up in advance by professionals, so that each child can achieve five goals, realistic and above all defined by professionals with families. Like holding a spoon, climbing stairs, or dressing alone. "On average, 80 to 85% of the objectives are reached, that is to say that the children are able to reproduce these gestures at home", enthuses Rodolphe, physiotherapist and coordinator of this course in Brest. “We do not sell dreams, nuance Sylvain Brochard. But the majority of parents tell us at the end of the course "When do we start again?"We see a boost in development and acquisition. " On the long term ? “Six months later, they are still cutting their meat or riding a bicycle,” says the researcher. Because these are always gestures used in everyday life, therefore repeated at home. "
“The children are progressing and it is thanks to you!
"
We can guess, through the inventive and always renewed games, the goal of the professionals.
Ruben, who loves the dinette, has fun on Friday with croissants and corn to Lucie, who encourages him.
She discreetly calculates how long the child sits properly.
At 11:30 am, picnics cover the game tables.
But it is not for all that a time of rest.
Romy, a Franco-English woman from London, manages to eat her compote with two different spoons while grabbing the pot, while Camille distracts her attention with a book of songs.
At noon, parents come to pick up children who are very tired from all this stimulation and laughter.
And after the lunch break, it's the team debriefing.
For an hour, each pair reviews the progress and difficulties encountered.
“To put on the coat, negotiations are tough with Mathilde,” recognizes Valérie.
It is not a very fun activity.
"We have to find another carrot," Rodolphe often repeats.
Sylvain Brochard then passes a head… and some encouragement.
“The children are progressing and it is thanks to you!
Keep having fun!
"We have the impression of being in a colony," confides Valérie, Mathilde's mischievous occupational therapist.
"We think by objective, from the needs and desires of the child"
This 3 and a half year old girl counts among her goals to climb stairs with a handrail on the right, to be able to move around her house (where the handrail of the stairs is on the right), and to put on her coat alone ... " But she also wanted to learn to ride a bike. It will not change his autonomy but it is important to also listen to the wishes of the child ”, rejoices his mother, Emeline. Who had been waiting for two years to be able to take his daughter from Lyon to Brest to participate in this course. Between the Covid-19 and the chickenpox which was invited at the last minute, "I thought we could never get on the plane," she sighs.
If Mathilde follows three sessions of occupational therapy, physiotherapy and speech therapist every week in Lyon, her mother seems convinced that this internship will do her the greatest good.
“Here, we think by objective, from the needs and desires of the child.
The professional does not intervene, does not touch the child.
And there is an energy, an enthusiasm, a joy… For us, there is no doubt, the method is effective.
We really hope that these therapies will one day be generalized.
"
Developing care for toddlers
This is the whole issue of this internship, which is therefore part of a clinical trial. To respect the scientific method, we had to find children with the same disabilities. To compare objectively, some have the usual care, while others benefit from the intensive course. And with the help of MRI and studies on their movement capacities, the researchers can verify, three months later, whether the internship brings a clear and lasting benefit. Knowing that all "child witnesses" have full access to the course, once all the exams have been completed.
In all, sixteen courses carried out in Brest, Angers, Pisa (Italy) and Brussels (Belgium) will have been offered to one hundred children in the space of two years.
Some had unilateral involvement (right or left), others are more disabled, because the involvement affects both sides of the body.
The researchers hope to objectify and analyze all the data by the end of 2022. "Today, I am not in a position to prove that the therapy works", continues Sylvain Brochard.
If this is the case, “we will surely be forced to adapt and offer early play and intensive therapies such as they are offered here.
This is what could change.
"
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